Make Visible: Chronic Illness Explored
Journalist Emily Kate Stephens explores complex chronic illnesses like ME/CFS, Long Covid, EDS, Fibromyalgia, and POTS. She interviews leading experts, scientists, and healthcare professionals to discuss the latest research and insights into energy-limiting, invisible conditions.
Episodes
#42 Uniting the field to move faster together with Complex Disorders Alliance's Amy Rochlin
Bringing together research across Long Covid, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS) and other co-morbid conditions heralding faster, patient-specific treatment.
Amy Rochlin’s mission stems from deeply personal understanding, but is driven by exceptional business sense. As the CEO of The Complex D
#41 Cracking the genetic code of complex chronic illness with Steve Gardner, PrecisionLife
PrecisionLife are cracking the genetic code in complex chronic illness with their latest research in ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long Covid.
Through large-scale studies in with DecodeME, the LOCOME Project, Sano Genetics' Gold dataset, and the All of Us research programme, they have identified hundreds of genes associated with Long COVID and ME/CFS. They beli
#40 Symptom connections in ME/CFS, Long Covid, EDS & Fibromyalgia - Orthostatic Intolerance, pain, PEM & MCAS
REVIEW: with Nancy Klimas, Peter Rowe, Lucinda Bateman, Todd Davenport & Theoharis Theoharides
For decades, people living with ME/CFS, Long Covid, fibromyalgia, EDS and other complex chronic illnesses have faced too few answers. But research is giving us a clearer picture.
As researchers uncover more about these conditions, we're beginning to see how the same underlying biological processes —
#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney
STORIES: ME/CFS and EDS left Lizzie bedbound for eight years - a mother's fight for answers and a daughter's fight to reclaim independence.
Lizzie Mooney became chronically sick with ME/CFS and Ehlers-Danlos syndrome (EDS) at just nine years old. By 11 years old she was bedbound. She would spend the next eight years in bed, unable to sit upright, and dependent on her mum, Amy Mooney, for almost ev
#38 Pacing is Power - POTS, PEM, EDS & MCAS strategies with Dr Clayton Powers
STRATEGIES: Physical therapy tools to reduce crashes and improve quality of life for POTS, Post-Exertional Malaise (PEM), EDS, MCAS, and infection-associated chronic conditions such as ME/CFS and Long Covid.
Many patients are told that they have anxiety or depression, or they just need to exercise, and that there is little that can be done to help their symptoms. In this episode, Dr Clayton Power
#37 ME/CFS breakthroughs: are treatments getting closer? With ActionForME, NIH, CODA, Bateman Horne Center & PrecisionLife
SCIENCE: Are ME/CFS research breakthroughs finally helping us understand the disease and move closer to treatments?
ME/CFS has been underfunded and under-researched for decades. Despite the scale and severity of the illness, major gaps remain in diagnosis, clinical care and treatment options.
Part of the challenge is scientific. ME/CFS is a complex, multi-system illness that can affect the immune
#36 My daughter’s Long Covid changed how I practice medicine with Dr Binita Kane
STORIES: What do you do when your medical training has no answers for your own child?
This is the question that Dr Binita Kane found herself facing in the aftermath of the Covid-19 pandemic.
As a Consultant Respiratory Physician, Dr Kane was among the first clinicians to recognise that many patients were not recovering after acute Covid infection. Yet when her own daughter’s life was brought to a
#35 Vagus nerve stimulation for chronic illness and better health with Dr Elisabetta Burchi
SCIENCE: What if a small, non-invasive device could help regulate your nervous system, reduce inflammation, improve cognitive function, and support recovery from chronic illness?
Dr Elisabetta Burchi, psychiatrist, entrepreneur, and Head of Research at Parasym, is helping advance the growing field of neuromodulation, using gentle electrical stimulation to influence the body's nervous system throug
#34 Fibromyalgia and chronic pain management with Ryan Bourdo, Physical Therapist
STRATEGIES: Physical rehabilitation for chronic pain conditions.
If you live with fibromyalgia, ME/CFS, EDS or chronic pain, you've likely heard that exercise may help. You've also probably learned, the hard way, that the wrong kind of effort costs you for days afterwards. The truth is that thoughtfully-designed physical therapy strategies can help with quality of life, if the approach is individu
#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes
STORIES: Undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) | Chronic Pain, Diagnosis & Living with Complex Chronic Illness
For 23 years, Dr Lucy Foulkes has lived with chronic pain, migraines, endometriosis, joint hypermobility, and a cycle of unexplained symptoms. She was seen by neurologists, rheumatologists, urologists, gynaecologists, physiotherapists, and nutritionists. Nobody connect
#32 Hidden Virus, Immune Exhaustion & the Brain: Long Covid, ME/CFS and post-viral illness with Dr Avindra Nath (NIH)
SCIENCE: Long Covid | ME/CFS | Neuroinflammation | Clinical Trials
What happens to the brain when a virus takes hold and why do some people never fully recover?
Dr Avindra Nath has spent his career at the intersection of neurology and infectious disease, from the early AIDS pandemic through Zika and Ebola to today's work on Long COVID and ME/CFS. As Clinical Director of the NIH's National Institut
#31 POTS: Symptoms, understanding, and management with Dr Tae Chung
STRATEGIES: Understanding Postural Orthostatic Tachycardia Syndrome (POTS) - Practical Strategies for Diagnosis and Treatment
“80- 90% of POTS patients are disabled to a certain extent - people who just cannot work or go to school or are limited in their daily function.”
— Dr Tae Chung, POTS Program Director, Johns Hopkins University
Postural Orthostatic Tachycardia Syndrome (POTS) is a complex co
#30 Navigating medical appointments with Dr Alba Azola
STRATEGIES: How do you navigate medical appointments when you’re living with a complex chronic illness?
Too often, patients with energy-limiting conditions are told there’s “nothing to be done.” Many are dismissed as anxious, not believed, and left without the care they need, across healthcare systems worldwide.
In this episode, we push back against that narrative.
We’re joined by Dr. Alba Azola,
#29 Long Covid: what has six years taught us?
SCIENCE: Long Covid awareness, understanding and research.
Long Covid Awareness Day (15th March 2026) marks six years since the COVID-19 pandemic unleashed its long tail of Long Covid on millions around the world.
In this week’s episode Emily Kate Stephens and Gez Medinger review the science and progress that has been made over the past six years in our understanding of this complex chronic condit
#28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story
STORIES: Oonagh Cousins - Olympic Hopeful to Long Covid Advocate
When professional rower Oonagh Cousins was pre-selected for the Tokyo 2020 Olympic Games, her dream was within reach. But when COVID-19 swept through the British rowing team, Oonagh didn’t recover like most others. Instead, she developed Long Covid, post-exertional malaise (PEM), and dysautonomia, forcing her from peak performance in
#27 Unlocking the strategies for deep sleep with David Joffe
Sleep strategies for Long Covid, insomnia, and chronic illness
When you’re living with a complex chronic condition like Long Covid, sleep can feel like the one thing your body needs most… and the one thing you can’t access. Whether you struggle with insomnia, restless legs, sleep anxiety, constant waking or crushing fatigue, this conversation offers strategies to help.
In this week’s episode of
#26 The truth about exercise & pacing in ME/CFS, Long Covid & POTS with Todd Davenport
Why can exercise cause post-exertional malaise (PEM) in complex chronic illnesses like ME/CFS and Long Covid, and how do we avoid the crashes?
If you experience a crash after a period of exertion, if traditional methods of ‘increasing fitness’ actually leave you with terrible side effects, this podcast is for you.
In this episode of Make Visible, physiotherapist and exercise scientist Todd Davenpo
#25 You are not alone: navigating post-holiday fatigue, grief and acceptance in chronic illness. Gez Medinger & Emily Kate Stephens
Welcome back to Make Visible.
For those living with chronic illness or invisible illness, the New Year rarely brings a “new you” — and that can be especially hard after the emotional and physical demands of the holiday season. If you’re navigating ME/CFS, Long Covid, Fibromyalgia, Ehlers-Danlos Syndrome (EDS), POTS, Chronic Lyme, or another energy-limiting condition, please know that you are not a
#24 Ehlers Danlos Syndrome & Orthostatic Intolerance in Chronic Fatigue conditions with Dr Peter Rowe
Dr Peter Rowe is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions. An expert in orthostatic intolerance (OI), which is prevalent in nearly 100% of his patients, he believes that these conditions are treatable and he can move patients from bed-bound to regaining a decent quality of life using existing techniques.
He is director of th
#23 Improving quality of life - managing P.E.M. and moving towards stability with O.T. Amy Mooney
Amy Mooney’s aim is to improve the quality of life for her patients. She is an occupational therapist specialising in the treatment of conditions that cause post-exertional malaise (PEM) and their comorbidities – working with patients with ME/CFS, Long Covid, Ehlers Danlos, fibromyalgia, dysautonomia, POTS, and MCAS.
Operating from a place of huge empathy and understanding – she is also a mother
#22 Vagus Nerve & inflammation: the body’s healing reflex with Dr. Kevin Tracey
Dr. Kevin Tracey is a pioneer in understanding the molecular basis of inflammation, and identifying the way in which neurons control the immune system via the Vagus Nerve. A neurosurgeon, scientist and entrepreneur, he is CEO of Feinstein Institutes, New York, where they bridge neuroscience, molecular biology and biomedical engineering. His lab’s discoveries led to the first clinical trials in neu
#21 Living life with energy-limiting conditions - Personal wins & perspective, with Gez Medinger & Emily Kate Stephens
In a change to our usual format, this week Emily Kate Stephens sits down with fellow journalist, podcaster and chronic illness sufferer, Gez Medinger to explore their personal anecdotes and discuss the strategies that have made a difference in the trajectory of their health.
Between them, over the last five years of their illnesses, they have interviewed hundreds of experts to unravel the science
#20 Practical guide to pacing and managing Post Exertional Malaise (PEM) with Dr Melanie Hoppers, Bateman Horne Center
Bateman Horne Center internist and paediatrician, Dr Melanie Hoppers, has always been driven to approach her patients’ treatment with a holistic strategy, combining first line medicines with lifestyle, diet, stress reduction and movement. But in 2015, when her daughter became sick with ME/CFS, it became an even more personal mission to understand, treat and create frameworks to assist people with
#19 Female hormones and the immune system, with Abigail Goodship
Analysis of wearable data gathered from the Visible app found that symptoms in Long Covid and ME/CFS fluctuated considerably in-line with the menstrual cycle, in a new study from Imperial College (currently in pre-print).
In this week’s episode Abigail Goodship, a biomedical scientist at Imperial College, responsible for scrutinizing the data from almost 4000 women, talks us through the findings o
#18 Leading research, delivering hope: The Open Medicine Foundation’s mission with Linda Tannenbaum
The Open Medicine Foundation is the world’s largest non-profit aimed at diagnosing, treating and preventing complex chronic disease.
This week, founder and CEO Linda Tannenbaum joins Emily Kate Stephens to discuss the OMF’s work, delivering collaborative research from some of the world’s leading scientists, and offering hope to millions.
Now with six specialised centers operating out of leading in
#17 PEM: measuring the threshold and understanding the cause with Dr. Rob Wüst
What is the threshold over which PEM is induced in chronic illness? This is a hugely important question for sufferers, and one for which Rob Wüst is trying to find an answer.
Assistant Professor in Musculoskeletal Health and Physiology at the Vrije Universiteit Amsterdam, Dr. Rob Wüst is able to see the physiological impact of Long Covid and ME/CFS in skeletal muscle abnormalities.
In his latest s
#16 Why are women more susceptible to complex illness? Predicting chronic conditions with Michal Caspi Tal PhD
This week’s episode takes us on an exploration of the exciting work coming out of M.I.T’s Biological Engineering teams into understanding infection-associated illnesses and the emerging field of menstruation science.
Emily Kate Stephens is joined by Dr Michal Caspi Tal, Principal Scientist of the Tal Research Group and Associate Scientific Director at the Center for Gynepathology Research. She is
#15 Monoclonal Antibodies and the Future of Complex Illness Treatment with Dr Nancy Klimas
A new clinical trial is underway to test a monoclonal antibody as a treatment for Long Covid.
In this week’s episode Emily Kate Stephens sits down with Dr Nancy Klimas at Nova Southeastern University (NSU), Florida, to discuss the trial alongside the groundbreaking research and integrative care, that is taking place at the Institute for Neuro-Immune Medicine, looking at Long Covid, ME/CFS and othe
#14. Wearable technology and patient-led innovation with Dr. David Putrino
Data gathered from wearable technology can warn of impending symptom exacerbation in complex chronic illness a new study has found.
In this week’s episode Dr. David Putrino discusses the findings. He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart
#13 Mast Cells and MCAS in complex illness: understanding and treatments with Dr. Theoharis Theoharides
Dr. Theoharis Theoharides ‘The Mast Cell Master’ has been at the forefront of mast cell research for over 30 years. A renowned expert in allergy, neuroinflammation, and mast cell biology, his work centers on understanding the regulation of these critical immune cells. His extensive studies explore their fundamental role in the body, the mechanisms behind their activation and inhibition, and their
#12 "Chronic Overlapping Pain Conditions" in ME/CFS, new insights with the C.D.C’s Dr Elizabeth Unger, Yang Chen & Elizabeth Fall
The U.S.A.’s Centre for Disease Control (C.D.C)
#11 Post-Pandemic prevalence of ME/CFS - what we can learn from the increase with Suzanne Vernon, PhD
In her latest paper Suzanne Vernon, PhD, Scientific Director at the Bateman Horne Center, reveals that ME/CFS prevalence is now 15 times higher than pre-pandemic estimates.
The study, carried out by the RECOVER initiative, and published in the Journal of General Internal Medicine confirmed that ME/CFS has a 4.5% prevalence among those who did not recover from COVID-19, and forms the most severe su
#10 Staying connected (Part 2): Dealing with isolation and limitations in complex illness with Suzy Bolt
When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her backgro
#9 Staying connected (Part 1): Dealing with isolation and limitations in complex illness with Suzy Bolt
When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her backgro
#8 Exploring the drivers of post-infectious illness, with Harvard Neuroimmunologist Michael VanElzakker, PhD
Dr. Michael VanElzakker’s mission is to identify the individual drivers of post-viral illnesses. “How do you find something when you don’t know what you’re looking for?” he asks, believing that COVID-19, whilst a disaster for humanity, is giving us the opportunity to establish practises to identify those unknowns and establish more unbiased research methodologies.
Whilst ME/CFS encompasses huge nu
#7 Discovering new treatments for Brain Fog with Yale M.D. Arman Fesharaki-Zadeh
Arman Fesharaki-Zadeh is a behavioural neurologist and a neuropscychiatrist whose primary focus has been treating patients with cognitive deficits – from Alzheimer’s to Traumatic Brain Injury (TBI). Since 2020 a considerable portion of his clinic at Yale Medicine have been Long Covid patients and he noticed similarities in symptoms with post-concussive syndrome and other neuroinflammatory conditi
#6 The Science of Stress: Exploring Brain Function, Inflammation, and Cognitive Health with Yale Prof. Amy Arnsten
Amy Arnsten, PhD, is a Professor of both Neuroscience and Psychology at Yale University, where she runs her own lab which studies and teaches about the brain’s higher cortical circuits and their molecular regulation.
In this week’s episode we discuss Prof. Arnsten’s recent paper published in Biological Psychiatry looking at the impact of stress (both physical and mental) and inflammation on the pr
#5 How our understanding of ME/CFS, fatigue and pain has progressed over the past decade with Lucinda Bateman M.D.
Lucinda Bateman, M.D. has been seeing patients, learning about, and educating about ME/CFS and fibromyalgia for decades. She is Chief Medical Officer of the Bateman Horne Center, Salt Lake City, whose mission is “improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating clinical expertise into medical education and research initiatives”.
Dr.
#4 Balancing the autonomic nervous system with Dr Boon Lim (Part 2)
In this week’s episode renowned cardiologist Dr. Boon Lim returns for Part 2 of the conversation with Emily Kate Stephens, presenting three clarifying analogies to represent a wider view of the impact of acute stress on the autonomic nervous system, and its role in complex chronic illness.
Dr. Boon Lim uses the poem The Blind Man and the Elephant to exemplify the need for us and our medical practi
#3 Brain Fog not ‘just in your mind’: new insights into physical markers of Cognitive Impairment with Dr William Hu
Director for the Center for Healthy Aging Research at the Rutgers Institute for Health, Dr William Hu is a cognitive neurologist: he studies and treats patients whose thinking is affected by disease.
Typically Dr Hu was dealing with Alzheimer's and related dementias in patients who were cognitively ageing whilst otherwise healthy, and those whose cognition was affected by their illness such as HIV
#2 How heart rate and symptoms are connected with Cardiologist Dr Boon Lim
Cardiologist Dr Boon Lim describes himself as an electrician of the heart. Extremely experienced in surgically repairing heart rhythms, he is also an expert in treating Postural Orthostatic Tachycardia Syndrome (POTS) and related autonomic conditions. His approach to the diagnosis and treatment of both the symptoms and pathophysiology of these disorders is refreshing – nuanced and holistic.
In t
#1 Patient Power: scientific and policy progress with Patient Led Research Collaborative (PLRC)
The Patient-Led Research Collaborative (PLRC) are a group of patient researchers who aim to facilitate patient-led research into infection-associated chronic conditions. Since their inception they have published numerous papers and articles including a complete review of the Long Covid findings in January 2023 in Nature, an article on designing clinical trials in Life Sciences and on the impacts
Make Visible: Trailer
Introducing Make Visible, the podcast shining a light on complex chronic illness.
Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve i
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